More than words: Photovoice as an innovative participatory approach to explore perceptions of rare dementia, a pilot study

Abstract

AbstractBackgroundThere is limited evidence internationally exploring the everyday experiences of people living with rare dementia (PLWRD)– by which we mean atypical, inherited, and young onset forms of dementia– from their own subjective perspectives. Photovoice (Wang and Burris, 1997) is an inclusive, empowering visual research methodology that facilitates collaboration and supports shared understandings. This pilot study presents findings from the first known study where an inclusive research team, including individuals with different rare dementia diagnoses (e.g. Primary Progressive Aphasia, Posterior Cortical Atrophy, Dementia with Lewy bodies) used Photovoice methodology to visually represent experiences and perspectives of living with these conditions.MethodDrawing on Freire’s empowerment pedagogy, the study aims were consistent with global Photovoice aims: enabling people to visually record critical dialogue about their experiences of dementia through photography. We investigated the benefits and challenges of Photovoice methodology with this population and sought to identify perspectives of rare dementia from eight PLWRD. Data analysis utilised an iterative, participatory approach in which researchers and co‐researchers selected, contextualised, and codified the data. Thematic analyses involved both inductive and realist approaches.ResultThis paper discusses some of the practical challenges associated with using this methodology with PLWRD, as well as issues concerning co‐researcher’s perspectives on the acceptability and utility of Photovoice. We examine the benefits and challenges of using Photovoice and discuss lessons learned relating to the co‐production of topics and outputs, including barriers and facilitators to co‐researcher engagement with the study processes (e.g. use of cameras, photo upload).ConclusionThis pilot study will help inform a larger scale project where Photovoice and other creative participatory approaches (e.g. graphic elicitation) will be applied within a participatory action research framework that will promote group and individual reflection on dementia perspectives. In turn we hope this will lead to social action on a local and national level by co‐researchers with rare forms of dementia. This study contributes to the existing, if limited, international literature on creative participatory approaches with PLWRD.